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Keeping The Love Alive: Friendships And The Alzheimer's Caregiver

Posted Apr 30 2010 5:45am

"We don't see things as they are, we see them as we are....."
By Sheryl Lynn

I'd planned to visit my friend Maria (not her real name) this past weekend. I live on the east coast; Maria lives in the midwest. We haven't seen each other in seven years. She's one of my heroes, somehow clinging to her surfboard while the surging waves of life beneath her have done their very best to throw her off, and she's been a great friend. I really wanted to see her.

Maria needed love and support as she dealt with the death of a loved one, and I wanted to be there for her. I'd broken my promise to be there for her when another loved one died several years ago, and it was especially important for me to be there for her now. I'd bought her a gift, I'd budgeted my time and then I checked the weather forecast.

After forty months of caregiving and managing the care for a dementia patient, I'm overly sensitive to engaging in stressful activities like driving long distances through thunderstorms. I started questioning the wisdom of travelling to see Maria.

I wanted to keep my commitment to her, and I wanted to make the choices that best supported taking care of me. I've learned the hard way that I need to put my own well-being first. In the old days, I would have just sucked it up and made the trip because that's what I should do. I made a different choice this time; a friendship may or may not survive my having made that choice.

I've lost many friends since my mother's catastrophic fall on Christmas Eve 2006 sent the two of us off to take this journey together. I think Anais Nin has the best explanation of why that is:
"We don't see things as they are, we see them as we are."
My friends lacked the life experience to understand where my mother is and where I am; their innocence caused them to project their own fears and insecurities onto me. I understand why that is. So how can we all learn to dance with each other?

I remember not understanding my best friend five years ago when she was the primary caregiver for her stepfather. His Alzheimer's caused him to say or do things that didn't make sense to me.

I'd cared for my uncle when he was dying of cancer, I'd cared for my soulmate dog when she was dying of renal failure, I knew how difficult those experiences were for me, and I thought I had all the caregiving experience to understand what Gina should say or do. Yeah, right.

I'd tell her what I thought she should say or do instead of just being lovingly present for her.

In my ignorance, I couldn't understand why she'd let her stepfather's needs dominate her life. I've now learned that one has to partner with a loved one as they go through the dementia experience to fully get what it's about. I'm grateful that Gina understood that I didn't understand her life and found it in her heart to love me anyway. I don't know what I would have done without her wisdom, her love, and her support during the past forty months, and I do my best to pay it forward by being there as best I can for others who grace my life.

I offer the following ideas on engaging in healthy friendships while caring for your loved ones
  • Many caregivers give and give and give, placing the needs of others above our own needs. That imbalance often attract others who want to take and take and take from us. Are you balancing your giving with your receiving? Do you feel unworthy or uncomfortable or guilty accepting gifts and compliments from others? If it's easier for you to give than receive, it's time to start practicing what my friend Tamara calls Extreme Self Care, or ESC. And yes, she cared for a mother with Alzheimer's. Do something just for you each day, even if you only can grab five minutes to do it. Take a walk or a salt bath, light some incense, ask someone to tell you a joke, tend to your garden, do something that makes your heart sing. You may find that committing to taking time for you each day causes others who want to continually take from you to fall away. Congratulations. You've now created space for others to find you who want to give to you.
  • Tell your friends how you cherish them for being there for you now. Give them the gift of appreciation, telling them how much you appreciate their love and support. Thank them each time they do something wonderful for you or say something wonderful to you. People often have this annoying habit of not being perfect. Go figure. Focus on and celebrate all the good you share in this moment instead of on how they've let you down in the past.
  • Commit to learning and practicing conscious communication skills. The act of learning stimulates your tired caregiver's brain and helps you learn more effective ways to communicate with those you love.
  • Even after committing to learning and practicing conscious communication skills, there may be times when the fatigue and stress win out. Tell your friends there may be times when you will be (gasp) HUMAN! Oh, the horror! Ask your friends to give you the gift of allowing you to be perfectly imperfect. Tell your friends what you need in this moment. Speak from your heart. Tell them how it is to be you. Use feeling statements like "I feel scared" instead of accusing statements like "You don't understand me." Feeling statements bring in love; accusing statements shut love out.
  • Before speaking your truth or writing that email, take a few long, slow, deep breaths, and ask yourself "What would love do in this moment?" Maria sent me an email yesterday entitled "I Deserve To Be Heard." Yes, she does. And I wish she would have called me instead of emailing me. I think voices work through conflict more effectively and more lovingly than fingers. Most of my family is dead; my last two close family members have dementia and are living in facilities. It's been a tough week for me, and I don't have the emotional energy to engage in an email debate. I sent her an email telling her I love her, I send my support to her, and I honor her for being upset with me. That's the best I can do right now.
  • Accept your hypersensitivity, and tell your friends that you're hypersensitive. Our senses become overly acute when caring for a loved one with dementia. We're constantly working to keep them safe. Tamara tells me she finally lost her fear of the ringing phone five years after her mother passed away. Once she'd made the difficult decision to place her mother in a facility, she'd received so many late night calls about what was happening to her that she became afraid of the phone. Sensitivity to ringing phones, the anger of others, driving through thunderstorms, the ups and downs of dealing with dementia - it's all a part of the dementia experience for many of us. I welcome people into my life who understand my hypersensitivity and are able to find it in their hearts to love me anyway.
  • It's so easy to expect our friends to show us the unconditional love we can only expect from God and ourselves. I'm blessed to have several close friends who give me the beautiful gift of allowing me to be me. I've learned to stop expecting others who don't understand what my life is like to suddenly get it. I've learned that support comes from unexpected places: the cashier at the diner, the manager at the crystal shop, the neighbor struggling with Alzheimer's and neuropathy, the woman I met at a Canadian coffee shop and have kept a friendship with. I'm grateful for the support however it shows up, and I've learned to keep giving my concerns to God.
  • There are times when it becomes impossible for friends to stay in our lives. They don't understand what it's like to be us, and it's fine that they don't. They have a different journey to take. Silently bless them and release them with love. Maybe they'll be back, and maybe they won't be back. Honor them for all they've brought to our lives during a very difficult time. They did their best in walking this walk with us.
  • The latest resources that have helped me feel loved and supported: "Loving What Is" by Byron Katie, "My Stroke of Insight" by Dr. Jill Bolte Taylor, "The Four Agreements" by Don Miguel Ruiz, and "Archangel Michael Oracle Cards" by Doreen Virtue. And to Bob DeMarco, a heartfelt thank you for gifting us with this amazing resource. I feel so grateful to have found you on Twitter. What a blessing you have been in my life! I honor you for gifting all of us with your wisdom, the information you've gathered, the inspiring guest writers, and now with the indomitable Dotty herself. C'mon. I know you can do it. Give the woman some potato chips already.

Sheryl Lynn is the author of the upcoming book "The Light Is A Thank You," which chronicles the spiritual journey through dementia she has taken with her mother, Eleanor. She is the host of "Glow With The Flow Radio Show," currently on hiatus.

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